Clash over uses of genetic information Lawmakers are told about potential abuses

March 05, 1997|By Michael Dresser | Michael Dresser,SUN STAFF

The life insurance industry and privacy advocates clashed yesterday before a General Assembly committee over the uses and potential abuses of genetic information -- a topic one witness described as "the issue of the new millennium."

The House Environmental Matters Committee heard calls from the sponsors of legislation to restrict the use of genetic information about individuals to "get out front" on an issue that is drawing increasing interest in state legislatures nationwide.

But Roberta B. Meyer, senior counsel of the American Council of Life Insurance, testified that the legislation would interfere with the industry's essential function of determining risk.

Two similar bills, introduced by Democratic Dels. Joan B. Pitkin of Prince George's and Michael J. Finifter of Baltimore County, respectively, would ban the use of genetic tests and other information about an individual's hereditary traits in making a wide range of employment and insurance decisions. The bills also would broaden the confidentiality rights of individuals who have undergone genetic testing.

The drive to legislate these protections springs from the dramatic advances that scientists have made in devising tests to identify people who are at risk of developing genetically based diseases -- decades before the first symptoms appear. Among the ailments for which tests have been developed are Huntington's disease, sickle-cell anemia and a form of breast cancer.

Optimism about the potential medical benefits of such early warnings has been tempered by concern that such information could be used to discriminate against people, based on a vague predisposition to develop a certain condition.

No witnesses appeared yesterday to testify as victims of such discrimination, but the sponsors warned that such cases were on their way.

"Such discrimination has been documented in health insurance, life insurance, disability insurance and employment," Finifter said. He said the Arc, an organization dealing with mental retardation issues, had documented about 2,000 cases of discrimination in the United States. Pitkin and Finifter both warned that if patients knew that the results of genetic tests could be used to deny them insurance or thwart their careers, they would avoid the tests and, thus, miss the possible early warning benefits.

"You want to encourage people to take advantage of the new technology," Finifter said.

Both bills are patterned after legislation adopted in New Jersey, but Finifter's goes a little further than Pitkin's, extending to cover disability insurance and certain annuities. Both would ban the use of genetic testing in the decision-making for life insurance coverage and employment.

Last year, Maryland adopted legislation barring health insurers from using genetic tests to determine who will get coverage or how much individuals would pay.

But Marta Harting, a lobbyist for State Farm Insurance Co., argued that the public policy arguments for protecting people against health insurance denials don't apply to life or disability insurance.

Harting said State Farm does not require anyone to undergo genetic tests, because they are too expensive. But she said the company should have the right to know about any genetic tests an applicant might already have had.

Meyer said the industry believes that it should not be denied a new and more effective way to predict risk. "We're worried that DNA-based tests will be tomorrow's urinalysis and cholesterol tests," she said. "From what we're hearing, this is going to be the standard of practice."